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- May 02, 1994
- Vol. 41
- No. 16
Growing Up Down
What's Life Like When It's Lived with Down Syndrome? Two Courageous Friends Shatter the Stereotype
Which makes it all the more remarkable that over the past three years Kingsley and Levitz have written a book together, Count Us In, Growing Up with Down Syndrome (Harcourt Brace). The book, which is in its third printing, has been enthusiastically received by many of the 250,000 people with Down syndrome in the U.S. and thousands more who know and love them. During a recent signing at a bookstore near their homes in New York's Westchester County, the authors outdrew Knicks basketball coach Pat Riley, who had been the store's previous biggest celeb. "We sold twice as many books," says Jason proudly.
The book, a poignant account of coming to terms with a disability while coming of age, is just one more example of the ways in which Levitz and Kingsley have defied Down syndrome stereotypes. Jason, an actor who has appeared on Sesame Street and other TV series, is about to graduate from high school. Mitchell, who graduated in 1991 and has been living on his own in a rented house since September, works as a coordinator for the Westchester Association for Retarded Citizens in a program that helps disabled people get jobs. "This Down syndrome is the wrong name of our disability," says Jason. "I think Up syndrome is [more] positive."
The fact is, lots of people have focused only on the down side of Jason and Mitchell's condition. First, there were the doctors who delivered them. Both obstetricians recommended that the boys be institutionalized and predicted that neither would walk, talk or learn. Then there were the educators who opposed putting Jason and Mitchell in regular classes.
Finally, there were the dozen or so publishers who rejected Count Us In, a book of conversations between the two young men that Jason's mom, Emily Perl Kingsley, a writer for Sesame Street, typed unedited into a computer. In the book, Jason and Mitchell talk frankly about everything from politics to sex to conflicts with their parents. "This is the first time we have had from their own mouths how young people with mental disabilities think and how they feel on a tremendous range of issues," says Emily.
In the beginning, the Levitzes had to figure such things out for themselves. When Mitchell was born in 1971 to Jack, the owner of a catering business, and Barbara Gibbs Levitz, director of a family resource center, his parents fell totally alone. After the initial shock of learning that Mitchell had Down syndrome, says Barbara, 47, she and her husband went in search of programs to help their son develop. There weren't any. "We had to create programs, gel them started," she says. They established a support group for parents and began sharing information about early intervention, in which physical therapy and mental-stimulation exercises are started in infancy.
Mitchell's development lagged behind that of his peers, but not by much. He walked and talked at 2. The family, which includes sisters Stephanie, 22, and Leah, 19, took him everywhere they went. "I would bring him to my business and into the community so that people would get to be comfortable," says Jack Levitz, 47. "At first people would say, 'I'm sorry,' and we would say, 'No, don't be. We're very proud of him.' "
Not that there weren't problems. Mitchell's sisters say he occasionally embarrassed them in school. "He would come up and hug and kiss my girlfriends," says Stephanie. Then there was the time a group of kids goaded him into pulling the fire alarm in high school. Mitchell was suspended for a week. "I had to learn to take responsibility," he says.
When Jason was born in 1974 to Emily and her husband, Charles Kingsley, a painting contractor, their obstetrician was blunt. "His recommendation was that I not feed him, hold him or gel attached to him—but to send him to an institution and tell our friends and family that he had died in childbirth," says Emily, 54. It look the reaction of her two stepsons, Glenn, now 38, and Todd, 35, to raise her spirits. "When the boys were told," says Emily, "they said, 'Of course you are going to bring him home. He's our brother.' "
At 3 months, Jason began early-intervention therapy. And Emily, her imagination honed by four years on Sesame Street, got working. She sewed a quilt made of fabrics with different textures—fuzzy, furry, bristly—to give him different touch sensations. Once she prepared 40 boxes of flavored Jell-O and put the mix into a large roasting pan. "Then we took Jason's clothes off and put him in," says Emily. "It was colorful and sweet." As Jason learned, so did his family. "We were told he would break our hearts, because he couldn't learn. So I held back," says Charles, 65. "But when you do mental and physical stimulation, you are right down on the floor with him, and he became my child."
Shortly after Jason was born, the Kingsleys joined the support group that the Levitzes had established, and soon a friendship developed between the two boys. As they grew older they began getting together to go to parties and the movies and to talk about their troubles and triumphs. They swam and played Ping-Pong and basketball together. They both kept up in school, and Jason excelled in math. "I'm mathemagical," he says.
While proud of their successes, both young men often feel socially isolated. "The other kids are driving and dating and even though they like Jason and are friendly to him, they do not include him in their weekend activities," says Emily. Adds Jason: "I wish I were invited to more parties." And although they are still young, Jason and Mitchell are saddened by the possibility that they may not have the opportunity to become fathers, since most males with Down syndrome are sterile.
Still, they have plenty of plans. Jason wants to continue acting and hopes to attend college after completing a two-year transitional program. Mitchell, who has worked as an office clerk for two New York state assembly members, has his eye on politics. "I might be running for public office," he says.
"And I'll be his press officer," says Jason, "and he's going to win!"
If that sounds unlikely, consider all that these two have accomplished already.
MARY H.J. FARRELL
JANE SUGDEN in Chappaqua, N.Y.
- Jane Sugden.
December 20, 2014
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